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Living With Facial Pain

Looking for Dr Springfield/Branson MO area


#1

Hi, I’ve been reading this sight for weeks. It’s such a comfort to know I’m not alone! I believe mine is TN1 because it has responded well to carbamazepine, although not completely. I started taking it 3 weeks ago, 300 mg a day. I still have pain if I touch my nose or walk in the wind, but the unprovoked attacks have stopped, thank goodness!! Just this week, I’ve started having new pain in my forehead and scalp when touched. I’m wondering why it is not responding to the med like the V2 is. Maybe it is, and would be much worse if not for the med.
I was diagnosed a year ago, but wanted to try alternitive treatments first. I had Upper Cervical chiropractic treatments 2-4 times a mo for a year. Hard to know if it helped because TN comes and goes in its early stages. Then in Feb it started escalating and got to the point where they were running together with very few breaks. I was exhausted from the pain and lack of sleep so filled the prescription started it 4/1. I have an apt 5/1 with my family Dr but I would like to find a Dr with experience in treating TN in the Springfield/Branson Missouri area. Any suggestions?
Thank you so much for this forum, it is so informative and interesting!


#2

Correction: I take oxcarbazepine


#3

Are you a United States military veteran? If you are (like me) I can give you some ideas of whom to see.


#4

No I am not a veteran. Thanks though!



ShowMe_from_MO said:

Are you a United States military veteran? If you are (like me) I can give you some ideas of whom to see.


#5

Oh dear, sorry I couldn't help. I live not too far from you out by Ft. Leonard Wood, but I get my care through the VA.


#6

I had to fly to michigan…to get better treatment than this state offers.

The one who wrote the book, Striking Back…is who i chose for my MVD.
…dr. Casey


4 years, no pain, no more meds or lidocaine patches…sometimes we have to look outside our area!
. For the best tratment.


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#7

Thanks for your response Kc Dancer! This is all a bit overwhelming at this point. On the one hand I read that doctors won’t even consider the surgery until you have exhausted all of the meds which could take years. On the other hand I read that the surgery is more effective and has a better success rate if you do it early within the first 3 to 5 years of the onset of TN. I have no idea where my insurance co stands on the issue of when surgery is allowed. I’m frightened at the thought of surgery, but even more frightened of the idea of battling this kind of pain for the rest of my life. I have so many questions. I’m reading the book Striking Back, which is wonderful. As far as looking for a Dr, do you think I should ask for a neurologist or ask for a pain management doctor? I have an appointment with my GP in two weeks. I will ask her if she has any way of finding a doctor who has actually treated patients with TN.

I did watch the seminar by Dr. Casey. It was very fascinating. Did you have to have a referral to get your appointment with him? Was your insurance ok with choosing him?

Sorry, this is so long. I just have so many questions…

Thank you!



Kc Dancer Kc said:

I had to fly to michigan…to get better treatment than this state offers.
The one who wrote the book, Striking Back…is who i chose for my MVD.
…dr. Casey

4 years, no pain, no more meds or lidocaine patches…sometimes we have to look outside our area!
. For the best tratment.


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#8

I am in St. Louis, MO. I have a few good doctors up here, and I know that is like a 5ish hour drive, but might be worth it for a consult:

Neurologist: Dr. Venkat K.C.-Rao (Office in the St. Anthony's Medical Buildings)

Neurosurgeon: Dr. Justin Sweeney (Office in Mercy Hospital St. Louis)

Both of these guys have been immense help for me.


#9

Thank you medphysicsRB. I will keep that in mind.



medphysicsRB said:

I am in St. Louis, MO. I have a few good doctors up here, and I know that is like a 5ish hour drive, but might be worth it for a consult:

Neurologist: Dr. Venkat K.C.-Rao (Office in the St. Anthony’s Medical Buildings)

Neurosurgeon: Dr. Justin Sweeney (Office in Mercy Hospital St. Louis)

Both of these guys have been immense help for me.


#10

hi, I have a Nero surgeon in Springfield that I am going to named Kutz. I am due to have G knife very soon there maybe he can help you? He seemed to me to know what it's all about


#11

Thanks so much for your reply. I will look into him. Does he prescribe your meds too? Or do you have a pain management Dr?


#12

Hi, I live in Arkansas but I go to the Hosp. there to get this operation. I think the Neuro. there will prescribe meds or they have some one that will. How long have you had to deal with this stuff? It's for sure a bummer no mater what. You can contact me via e-mail if there anything I can do to help. Red, here is a great source for help too


#13

I did not to have to wait for years…i was on meds for a year…insurance approved dr. Casey…did consult over email and my records.
4 years no pain.

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